Sometimes Love Comes in Leg Warmers

Dealing with the cold weather with a chronic illness is not an easy thing. I have found from years of experience that if I am warm it is not so hard on me. I have done a lot of experimenting to keep myself warm during the cold weather. I live with my heating pad all the time anyway so I use it to keep warm in the winter and sometimes the fall. I have learned that it is better to dress in layers when I am inside and out. I usually wear double pairs of socks at times when my feet get chilled. Today I received a package from my father with a couple pairs of legwarmers. Even though we have cold weather they do not carry them in the stores here. They are important to me because I get a small chill and my legs are hurting me a lot. So I am thankful to have two pairs of leg warmers for my legs. For those of you who do not know what leg warmers are they cover up your legs from ankles to right below your knees.

Life Can Be a Royal Pain in the Moon

It’s been a rollercoaster of a week for me. The computers have been a royal pain between the Linksys not working and the cable modem lights turning off and on. I think I have that issue fixed. Some days computers are more of a pain than they’re worth. Our cables been a royal pain for the last few weeks, but the last week has been really bad. The channels turn totally back then tell you to please stand by. The insanity with the cable is a really annoying at times. I have an area on my middle back that hurts pretty bad and well it’s also been a royal pain in the moon. I was supposed to have a tooth extracted and I had to cancel the appointment because of the upper respiratory infection, it’s taken me a few years just to get the guts to have the thing pulled. On top of that I have TMJ and I need a new splint, but I’m not sure where I’m going to find the money for one. I clinch my teeth at night and I wake up with the joints being a royal pain. I’m hoping to reschedule the appointment next week, if they don’t have a waiting list. Where I’m going to have the tooth extracted doesn’t do the splints so I have to go through the whole process of a new patient again. I hate being a New Patient.

Wanted: Vitamin D That Lasts

One of worst parts about going to the doctor is waiting for the test results. Yesterday, I was tired of waiting for the doctor to call about my lab results so I called his office. The nurse called at almost 8 o’clock tonight to give me the results of my labs. Once again my vitamin D level is really low again. I cannot win with the vitamin D level. He has put me back on the high dose of vitamin D again, this time I’m on the 50,000 units of vitamin D for the next 7 months. The first dose is I have to take the 50,000 units for 6 weeks then once a month I have to take the 50,000 units for 6 months. Last time I only had to take the 50,000 units for one month. The vitamin D level is the hardest level to keep up.

Kids, Doctors and School Oh My

We started school about three weeks ago and it’s been smoother then last year. I bought some software where my daughter can do her school work on the computer and it grades things automatically. It makes a big difference when you’re sick because I was beginning to think I might have to send her back to public school and that didn’t sit well with me. She hated public school because of all the tormenting of the other kids so I really felt torn. I had to pay a little extra for the software, but I needed something to make both of our lives better. It helps avoid the fighting with my daughter. I went to my rheumatologist last week and it seemed like a good appointment. He did a lot of blood work which made me feel like a human pin cushion. I hope my vitamin D levels come back okay. I’ve come to realize the levels won’t ever be normal. He did change the times I take a couple of my pills around to help with the morning stiffness and the pain level, but I’ve yet to see any difference. I need to make a phone call to the neurologist and I sent my medical release back in July. She was supposed to call me, but I’ve yet to hear from her. I’m not sure if I like her or not because she was too professional. Another words, I felt like she was stone cold, but sometimes the first visit doesn’t tell it all.

30 Things About My Illness

1. The illness I live with is: Lupus, Chronic Fatigue and Fibromyalgia

2. I was diagnosed with it in the year: 2001 (not totally sure.)

3. But I had symptoms since: I was a child

4. The biggest adjustment I’ve had to make is: having to stop working and the constant fatigue

5. Most people assume: I’m not telling the truth

6. The hardest part about mornings is: being so stiff and sore.

7. My favorite medical TV show is: ER and Strong Medicine (hard to choose just one.)

8. A gadget I couldn’t live without is: my rice heating pad.

9. The hardest part about nights is: tossing and turning in pain and the silence.

10. Each day I take 12 or more pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried many things, but wish something would help.

12. If I had to choose between an invisible illness or visible I would choose: visible (but, it depends)

13. Regarding working and career: I miss it a lot and wish I could have it back.

14. People would be surprised to know: I’m not as strong as people think.

15. The hardest thing to accept about my new reality has been: not being the kind of Mom I dreamed of being.

16. Something I never thought I could do with my illness that I did was: don’t know

17. The commercials about my illness: make me cringe, Lyrica over and over….. Like I need reminder of the pain.

18. Something I really miss doing since I was diagnosed is: being able to run errands without loss of energy.

19. It was really hard to have to give up: my memory not being what it used to be.

20. A new hobby I have taken up since my diagnosis is: writing

21. If I could have one day of feeling normal again I would: visit an amusement park.

22. My illness has taught me: to slow down.

23. Want to know a secret? One thing people say that gets under my skin is: people not acknowledging my sickness and being treated like I’m broken.

24. But I love it when people: listen and try to understand what I’m going through.

25. My favorite motto, scripture, quote that gets me through tough times is: the serenity prayer.

26. When someone is diagnosed I’d like to tell them: find out as much as you can about the illness and don’t take doctors word as gospel truth.

27. Something that has surprised me about living with an illness is: how frustrating it really is to be in pain day and night.

28. The nicest thing someone did for me when I wasn’t feeling well was: helping me on bad days.

29. I’m involved with Invisible Illness Week because: I want to speak awareness of chronic illnesses

30. The fact that you read this list makes me feel: good and glad I could share my story.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

The Heat is On

Lately, my feet have been giving me a real fit. I’ve tried heat and it just doesn’t work to numb the pain. I have tried ice packs and well it numbs them for a while, but it chills me to the bone. Chilling to the bone makes me ache all over. I just cannot win. I wish there was a lotion or something else to put on them. They get so bad I cannot walk on them because they feel like hot pokers. Luckily, I have my wheelchair as I cannot take even a few steps without horrible pain in my feet and legs. I do use a wheelchair when I cannot walk, but the pain in my legs just makes things so unbearable. When they are flared up I keep them elevated. The problem is I have nerve damage in both legs and well when it rains leg pain it pours. I do take a medication called Lyrica and it does help, but it’s not a cure all. I hate how the lupus limits things in my life. I hate LUPUS with a passion.

Flu Shot or Not? You be the judge

The CDC is really concerned about the outbreak of the Swine also called H1N1. Most people are wondering if they should get the shot or not. I’m concerned about taking the shot this year because the clinical trial is done over such a short time, but the Lupus Foundation of America is monitoring the situation. The best way to deal with the flu is by taking preventive measures.

Here are some tips to help you stay well:

1.) Wash your hands frequently with soap and water and use a paper towel to turn of the faucet. It defeats the purpose by touching the faucet that you’ve already dirtied with your hands.

2.) Wash your hands when you first come home.

3.) Carry a bottle of hand sanitizer in your purse or car. When your kids get in the car have them use it before they touch anything. I use to send a bottle of hand sanitizer with my daughter to school in her lunch box and one in her backpack. The one in the lunch box so she can wash before she eats as the school didn’t give them the opportunity to wash  hands. They teach kids to wash their hands before eating in preschool then they get in elementary school and they forget it. Never did understand this one.

4.) If your sick stay home.

5.)  Don’t touch your eyes, nose or mouth.

6.) If you’re sick wear a mask to prevent further spread of the flu and wear one if your immunity is down. It’s better to be safe then sorry.

The Lupus Foundation of America has some good articles on the upcoming flu season.

Swine Flu Advisory for People with Lupus

Immune Responses to Flu Vaccine Diminished in People with Lupus – However Vaccinations Still Recommended

CDC guidelines for Swine Flu

Are you taking the Flu Shot this year?

Help Get Access to Affordable Medication

Can you pass this along via your blog, and to all your contacts?

Lupus Foundation of America Needs Your Help — Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

Go to Lupus Foundation website link to help with access to affordable medication

Click on the link “Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act,” enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Please ask your family, friends and coworkers to call on your behalf as well.

Thank You For Your Help, It only takes a minute to make a world of difference to a lot of people and maybe your one of those people that needs help with medications.

Rest In Peace Michael Jackson

Micheal Jackson was pronounced dead at the UCLA hospital yesterday from a heart attack. It’s a sad day in America for all of his fans and  most of all his family. Many people may not know that he had Lupus according to what I’ve read in the past. It makes me wonder if the cardiac arrest was related to the Lupus. Then the talk of him  abusing drugs is very sad. Chances are if he was abusing drugs it may have been from the pain associated with lupus. Anyone in chronic pain understands just how unbearable it can be to be in pain everyday  of your life.Sometimes it’s hard to control the pain. My condolence to the family. It’s so obvious he is loved. RIP the “King of Pop” Michael Jackson. You are loved all over the world and you legacy will live on.

Why Not Me?

Finding some peace with your chronic illness is not easy. It took me literally years to come to terms with the pain I deal with day after day. I went through the why me’s and being in plain old denial. It took a while just to look myself in the face as I only saw the illness, not what’s below the surface. I guess it hit me harder because I had so many plans for my life. Recently, I heard something on TV that really got me to thinking about my illness. The man said instead of saying why me, we need to say why not me. And then you need to figure out what you’re going to do with the illness. Ya, it’s easier to roll around in my own misery instead of picking up my boot straps and dealing with the illness. I’m now in the process of putting myself back together after years of depression and denial. This is something hard to share, but if it helps one person to cope with a chronic illness or any other obstacle that comes their way I’ve achieved something. So I’m off to stay away from the Why Me’s, what are you going to do?